Do doctors' offices share our data without our knowledge?

[Anonymous]

Anonymous wrote:I am an NP. It is hugely helpful for me to see prior diagnostics and medicines which were dispensed, even if not taken. Patients come in with a lot of issues and don’t always remember what they have taken or procedures/imaging they have had. From a provider point of view, it is incredibly helpful. Even a medicine taken for a short time can have effects that are common that lots of folks are not aware of. I cannot think of a scenario where having more information is not beneficial to the patient.

I am a patient and I can absolutely think of such a scenario—more than one, in fact. Providers are not free of bias. They have been shown repeatedly (in peer-reviewed research) to make bad judgment calls based on bias. This includes bias about things like STI status, prior recreational drug use, prior abortions, and lots of other things that may not be related to today’s visit.

If the patient withholds info and it turned out to be relevant, that is on them. But if the patient has no control over what information you get, they are at your mercy. That’s not inevitably beneficial.

[Anonymous]

Within hospital systems yes, and for vaccines there is a state registry and for prescriptions too.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I want any doctor I see to be able to quickly access all of my records. Why wouldn't you want this??

With the 20 min they spend per patient, I doubt the usefulness of giving my medical info to various companies with questionable IT security outweighs the risk to my privacy.

I lived just fine before med records were digitized.

Prob doctors use AI now to summarize our info so there is a chance the AI will be wrong while using our personal data to build future AI tools.

We are guinea pigs.

OP

My primary care just started using AI for notes - military - I'm assuming its a military thing but she had to say it before doing.

[Anonymous]

You can ask what central database they have access to. "Epic" is a major one.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I want any doctor I see to be able to quickly access all of my records. Why wouldn't you want this??

With the 20 min they spend per patient, I doubt the usefulness of giving my medical info to various companies with questionable IT security outweighs the risk to my privacy.

I lived just fine before med records were digitized.

Prob doctors use AI now to summarize our info so there is a chance the AI will be wrong while using our personal data to build future AI tools.

We are guinea pigs.

OP

I work in privacy. You signed something at one point consenting to that access. And yes, overall the sentiment is that the privacy issue is outweighed by your doctors knowing your health history. Medical care is so fragmented these days so it is especially important.

As far as AI training, it is more unlikely you consented to that, but depending on the language of your consent, info could be used in ‘de identified’ form. You can ask for what you signed.

[Anonymous]

I am a patient and I can absolutely think of such a scenario—more than one, in fact. Providers are not free of bias. They have been shown repeatedly (in peer-reviewed research) to make bad judgment calls based on bias. This includes bias about things like STI status, prior recreational drug use, prior abortions, and lots of other things that may not be related to today’s visit.

If the patient withholds info and it turned out to be relevant, that is on them. But if the patient has no control over what information you get, they are at your mercy. That’s not inevitably beneficial.

It is not “on them”. I make clinical decisions and prescribe medicines that can have interactions that can lead to significant side effects.

For example:

1) The patient is taking a compounded GLP-1 that I don’t know about. I order a colonoscopy, the patient doesn’t hold the GLP-1 and aspirates during the procedure.

2) The patient is taking a medicine for anxiety/depression and I prescribe a similar medicine for a pain syndrome and they develop abnormal electrolytes or serotonin syndrome.

3) I order imaging for a patient that recently had imaging and the patient is getting exposed to unnecessary radiation.

4) A patient has been treated with multiple courses of antibiotics a

I am not dismissing your concerns. I am saying that it is not on the patient. We are responsible when things go wrong.

[Anonymous]

Anonymous wrote:PS: They also take notes on your personality, so I act how I want to be perceived.

One doctor noted I was “pleasant” along with my race (what they think my race is anyway) and age.

I happened to have one doctor who shared ALL the notes other doctors made. Now, with digitizing, the notes sre more sanitized.

In one doctor note, he said I did not adequately prepare for the test. I did so he was incorrect, but his note is still out there saying I did not “comply.”

Try getting incorrect things changed. Very hard.

OP

OP, this is insane. how do you know this? did you see those records??
the age thing - i mean, every doctor has our DOB on their forms, why would they need to guess it??

[Anonymous]

Anonymous wrote:

Anonymous wrote:PS: They also take notes on your personality, so I act how I want to be perceived.

One doctor noted I was “pleasant” along with my race (what they think my race is anyway) and age.

I happened to have one doctor who shared ALL the notes other doctors made. Now, with digitizing, the notes sre more sanitized.

In one doctor note, he said I did not adequately prepare for the test. I did so he was incorrect, but his note is still out there saying I did not “comply.”

Try getting incorrect things changed. Very hard.

OP

OP, this is insane. how do you know this? did you see those records??
the age thing - i mean, every doctor has our DOB on their forms, why would they need to guess it??

Yes, I saw the document in my online files. This one primary doctor I used to have would have notes that showed what doctors said about me, and one included race.

At Walter Reed, one doctor even recited his own notes in which he quoted a joking remark my dad said on a previous visit. This joke was not related to the health condition.

They will quote you in their notes and did that even before AI. So now I act very boring.

[Anonymous]

It is common to state the age and write “pleasant” in the History of Present Illness section of the chart.

It is also very common to add notes about family members, vacation plans, what someone does or did for a living.

One of my mentors in the hospital used to write the funniest thing the patient said during the visit.

It seems you are finding these things negative and intrusive. From my perspective, it is a way to develop a human connection with patients and foster a collaborative relationship with someone I may see several times a year for many years.

[Anonymous]

Electronic documentation made some things more shareable. In general, I think more information is helpful and reduces duplication of tests and prevents medication errors. But, it makes it harder than it already is to change providers, patients don't understand what is shared and that can cause potential embarrassment, and patients don't understand that electronic messages are part of the medical record.

[Anonymous]

Anonymous wrote:It is common to state the age and write “pleasant” in the History of Present Illness section of the chart.

It is also very common to add notes about family members, vacation plans, what someone does or did for a living.

One of my mentors in the hospital used to write the funniest thing the patient said during the visit.

It seems you are finding these things negative and intrusive. From my perspective, it is a way to develop a human connection with patients and foster a collaborative relationship with someone I may see several times a year for many years.

I can understand noting general disposition, living situation, and career but I don't understand how the bolded are relevant to medical care.

[Anonymous]

Anonymous wrote:It is common to state the age and write “pleasant” in the History of Present Illness section of the chart.

It is also very common to add notes about family members, vacation plans, what someone does or did for a living.

One of my mentors in the hospital used to write the funniest thing the patient said during the visit.

It seems you are finding these things negative and intrusive. From my perspective, it is a way to develop a human connection with patients and foster a collaborative relationship with someone I may see several times a year for many years.

Some of this is kind of creepy. Anyone and everyone with professional access to the system can effectively read these very personal “notes,” which patients previously presumed were part of the private portion of their interaction with their doctor.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It is common to state the age and write “pleasant” in the History of Present Illness section of the chart.

It is also very common to add notes about family members, vacation plans, what someone does or did for a living.

One of my mentors in the hospital used to write the funniest thing the patient said during the visit.

It seems you are finding these things negative and intrusive. From my perspective, it is a way to develop a human connection with patients and foster a collaborative relationship with someone I may see several times a year for many years.

Some of this is kind of creepy. Anyone and everyone with professional access to the system can effectively read these very personal “notes,” which patients previously presumed were part of the private portion of their interaction
with their doctor.

I’m the one who works in privacy. These notes aren’t open to lots of people as you imply, this area is highly regulated by law, and there are penalties for sharing or disclosing info inappropriately. Nurses have been fired for sharing info about a patient with a non access co worker, that sort of thing.

But yes, the amount of info collected on us is creepy, but I find this collection has a good reason for it. It’s the data collection including location, habits, purchases, etc for advertising purposes that creeps me out.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It is common to state the age and write “pleasant” in the History of Present Illness section of the chart.

It is also very common to add notes about family members, vacation plans, what someone does or did for a living.

One of my mentors in the hospital used to write the funniest thing the patient said during the visit.

It seems you are finding these things negative and intrusive. From my perspective, it is a way to develop a human connection with patients and foster a collaborative relationship with someone I may see several times a year for many years.

I can understand noting general disposition, living situation, and career but I don't understand how the bolded are relevant to medical care.

Many people, especially older people, are used to having a relationship with their doctor. They have seen the same person for years. They like to be remembered.

For the doctor, they can see 10-30 patients a day. It is helpful to have something in the chart to ask about.

It is all about relationship. Patients, in my experience, are appreciative that you think of them as a whole person and not just a patient.

I think younger people think of appointments in a much more transactional way with no need for small talk.

[Anonymous]

The problem with this system is not the convenience for your doctor. It's that your sensitive information can potentially get abused by say, the receptionist or other personnel. If you live in a big city it's less of a concern because big cities are impersonal and nobody really cares to get all up in other people's business. Outside of big cities, people are all about getting up in other people's business. Guaranteed they will read your very personal information and broadcast it. Guaranteed. If your enemy works in a medical setting, your information is getting spilled. That's the problem with this system.